NGO DOWN SYNDROM SLOVENIA (DDSS)

DDSS was founded in 1997 as a part of the NGO Sožitje-Ljubljana, a NGO supporting persons with intellectual disabilities; in 2012 it was reorganized to become an independant NGO.

DDSS is carrying out its work in three main areas: special social programs, marking of Down Syndrome World Day, dissemination of knowledge about DS

I. Special social programs

Early intervention program for children with DS from 0-7 years. DDSS developed this program and carried it out in Kranj, Ptuj and Novo mesto. It was supported by »Zveza Sožitje« which took it over and broadened it to all children with intellectual disabilities, children with DS being the major part in it. DDSS is closely cooperating with Zveza Sožitje in this program. Appr. 20 preschool age children with DS are included in it

Teaching help and gymnastic support programs: these two programs are being carried out in Kranj and Ptuj. The program is aimed at giving tutoring to school children with DS and show their parents what methods they should employ while helping children with school work. Gymnastic support is a program specially developed by a gym-teacher who is also father of a child with DS. He implements the program in Kranj. In teaching and gym-support programs 20 children were included.

For teenagers (10 – 18 years) DDSS prepares every year a 5-days camp at the river Kolpa. Participants get an experience of life in the open air; learn about the life in a small community; share duties for their daily life; prepare a camp-fire evening where they perform songs and dances.

For families with children with DS DDSS organizes week-end seminars in one of Slovenian spa ( Strunjan, Dobrna). Seminars have a structured program: there are three lectures for parents with a workshop following the lecture; they sometimes include visit to an institution for adults persons with intellectual disabilities or a similar institution. During the time parents are busy with their duties children are taken care of by carers- volunteers of the DDSS who are qualified to work with special needs children. There is some leisure time given too for families to spend time together.

In 2013 DDSS prepared four one-day workshops for families with children with DS, focused on one selected topic being of interest to the families. During the workshop carers-volunteers take care of the children. DDSS organizes also lectures on topics of interest to parents as well as to the professionals.

II. Marking of 21. 3. – the World Down Syndrome day

6. In November 2011 the UN general assembly declared 21. 3. the World DS Day. On this day in 2012 and 2013, DDSS members as well aa members of other organizations dealing with problems of persons with DS were received by the President of the Republic.

Around this date DDSS organizes concerts (Kranj, Novo mesto, Krško) and other performance (Ptuj) with two objectives: to raise public awareness of DS as well as to raise funds for its work.

DDSS prepared a poster calling attention to this group of children and adults and delivered it to different institutions in Slovenia ( schools, medical centres etc). It prepared also a badge marking this day.

In 2014, DDSS organized a round table on the topic of access to good health care for persons with DS which was proposed by the DS International as the topic of the year.

III. Dissemination of information on DS, publishing

In the past, DDSS ordered 40 boxes of a specialized pedagogic tool »with gestures supported communication« from DS InfoCenter in Germany and adapted this tool (300 hundred small cards with signs ) for Slovenian language and sold the boxes to institutions or persons who had ordered them. At the same time, DDSS gave the incentive to the government Institute for Education to acquire this tool for schools on a larger scale. In this way, 500 pieces of this pedagogic tool were acquired by the government and distributed to institutions as well as to families. This has been an important act to enhance early speech development in babies and toddlers with DS (as well as in other children with speech problems).

In cooperation with the Faculty of Education, University of Ljubljana, and the »University for the third life period« ( the group for German language) DDSS succeeded in translating a standard work for helping children with DS develop their speech: the result was publication of a handbook »Early support for language development in children with DS« by Etta Wilken, University of Hannover.

In 2013, DDSS published a booklet »Guidelines for parents of newly born babies with DS« translated from English which was distributed to all hospitals and medical centres in Slovenia.

Together with the Faculty of Education, University of Ljubljana DDSS organizes one conference a year on one of the topics interesting for parents as well as professionals working with persons with DS ( e.g. early intervention for children with DS, Inclusion of children with DS in regular schools, Communication between parents and specialists dealing with children with DS). Materials of the conference have always been published.

DDSS organizes also several lectures of specialists, among them of a Croatian specialist in mathematics on the topic of how to teach math to children with DS.

For its members, DDSS organizes yearly meetings, e.g. visit to »Mozirje park« or meeting with the Union of Gold Wing moto clubs of Slovenia – where members of this union organize a picnic and ,among others, drive children and adults with DS on their motorbikes in a new , well organized park in a beautiful settings close to mountains.

DDSS has well organized administration and accounting service, collects member fees and has a well prepared web site: www. downov-sindrom.si